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2.28.2010

I last blogged just before we headed up North for Erika's Dream. It was an amazing weekend. I wore what will most likely be the most fabulous shoes of my life (after wearing them once I'm good for another 30 years). We saw many of our Rett family and were joined by our friends Rick and Rachelle. For the first time in four and a half years I was confident that the girls were fine and I was able to really exhale. I woke Sunday morning at about 4:30 so excited that I couldn't go back to sleep. I just kept thinking about what Dr. Jones (one of my favorite people on the planet) said in her speech the night before, "Rett Syndrome is no longer considered a degenerative condition." Those words carry so much weight in my heart, in Oct. 2007 when we got our diagnosis it was thought to be degenerative. In 2008 I was told by the school that having Rett meant that you were mentally retarded (they used nicer words, but that is what they meant). On Wed. msnbc.com had an ad for IRSF on their homepage, that night Charlie Rose had Dr. Huda Zoghbi, one of the researches who found the MECP2 gene in 1999 on a panel that discussed early brain development and the role that Rett Syndrome is playing in how scientist understand it all, really amazing. The next day Dr. Bird (rett expert that reversed it in mice) released a paper that redefined what was thought to be understood about how the Rett Syndrome protein worked. So it has been a pretty exciting and emotionally exhausting few weeks for me in Rettland. While all this was swirling around in my head we went to Disneyland for Claire's big trip, Chloe figured out how to crawl, pull to stand and is nearly climbing. All in all I do think that Feb. 2010 was one of the greatest months of my life. As intense as all of it has been, I hope to just remember it as the month that I wore the most fantastic shoes ever!

2.13.2010

I think that the best way to describe it all is that it has been quite a ride. I had such a normal life, then Claire was born. Then she didn't gain weight, just as we took her out of the hospital "AMA" I got the call that my mom had suffered a huge stroke. Then we moved to AZ, six months later we moved back. Then we learned that something was amiss with Claire. Lots of specialist and testing and we learn she isn't necessarily going to die soon, she just has Rett Syndrome, such good news, sort of. As Claire stabilized I tried to try to be alive and feel. There were glimpses of life, but much more numbness. Then I was pregnant and somebody drove through the back of our truck. Then Chloe was born. So many highs and lows, yet along the ride I have felt very little of it. The last few months I have really been fighting to to regain myself and not just be the sum of my circumstances. Through all of the progress and set backs I am emerging and it feels so good to feel again! This weekend we will be attending Erika's Dream. An event that funds Katie's Clinic for Rett Syndrome. As I prepare myself for this I think of all of the other families that need this. Rett has not only stolen my dreams for Claire, but dreams for many others too. The hard part about feeling is that you can't just pick the good. But I have to say, it is so much better to feel both the good and the hard than none of it. It truly is what gives my life the depth that it has. It is what allows me to look at this picture and smile, not half, I'm busy and sure that is cute smile. Rather a slow, thankful, awe struck smile.

2.12.2010

I think that I may have mentioned that typing has been hard in the last few months because of my wrist. I was referred to a surgeon as I wasn't healing as well as I should have. Turns out I wouldn't get better until they took the cyst of the center. So on Monday Feb. 1st they took it out. It is a little disturbing how good I am getting at this surgery stuff, seriously, I am fine to not have another for a long while. Nothing too exciting about this one. Jared dropped me off at the curb and I was texting him to hurry up and pick me up a few hours later. I do have to say that general anesthesia never leaves you feeling good, nor do cuts on your body that are an inch or longer. The hardest part was the 10 days following. I had a bandage on and could not move my wrist at all. So I wasn't able to pick up either of the girls as that requires two hands. I got the bandage off yesterday. It worked out well that as I got home Chloe was just ready to get out of her crib after her morning nap. She was up on her knees which helped, I picked her up and it was the most excruciating pain. She buried her head into my should and then smiled the sweetest smile. It was great! Then Jenna saved me and I went and iced it. It is so good to be working on healing. I am thrilled that I will be in a lot less pain for the big trip to met Ariel and will have two hands to help as both girls are working on standing and walking.

2.06.2010

This will be short because typing with one hand takes forever! I knew that we just had to make it through January and that things would improve. I had no idea that they would get so good so fast! Claire and Chloe are both amazing and so much fun. I do miss caring for them very much. Only 5 more days until I am allowed to try to lift them, I am anxious and eagerly anticipate my recovery. I know that I won't be 100% right away, but now that the problem has been fixed it is nice to know that I am at least recovering and not just managing the pain. We got approval for the Eco Point and are just waiting for a denial from our primary insurance, which has never been hard to get. It is possible that Claire will have her computer to speak with in the next two weeks. Just the thought is so unimaginable! Chloe is certainly determined and full of energy. Her newest trick is pulling to high kneel. It looks like she will be pulling to stand soon, a feat that Claire is still working on. Such is my life, amazing levels of joy and grief in a perfect coexistence, even in the greatest month of my life. I have been taking pictures in an effort to replace the words that I don't have time to type. Please check my flickr page with the link on the sidebar. Their faces tell the story better than I can. I hope that you are having a great February and celebration of love, life and today!

About Me

Most of my time is spent getting to know our little gift Chloe and working to enable her big sister Claire. I love motorcycle rides with my husband and walks along the cliffs. I can't believe that God has given me so much, I am just trying to soak it all in.

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As defined by Webster:

or·gan·ic

4 a: forming an integral element of a whole :fundamentalorganic parts of the action — Francis Fergusson>b: having systematic coordination of parts :organizedorganic whole>c: having the characteristics of an organism: developing in the manner of a living plant or animal organic>

1ex·pe·ri·ence

3 a: the conscious events that make up an individual lifeb: the events that make up the conscious past of a community or nation or humankind generally4: something personally encountered, undergone, or lived through5: the act or process of directly perceiving events or reality